Using Quality Improvement to Expand and Align State Public Health Long-Term Follow-up Data Collection Across Newborn Screening Conditions

Abstract

Context: Despite the undeniable success of newborn screening (NBS), numerous barriers exist regarding long-term follow-up (LTFU) of children with conditions included in NBS. Furthermore, there is a focus on condition-specific follow-up with no national guidelines for standard quality measures collected by state public health LTFU programs. Program: Minnesota Department of Health (MDH) Longitudinal Follow-up for NBS. Implementation: A state public health LTFU for NBS quality improvement (QI) project was carried out with collaboration between MDH project team members and a QI Steering Team who provided clinical, public health, education, caregiver, and community perspectives and expertise to MDH. Relevant measures were selected from existing data elements, and additional measures were developed based on exchange between MDH project team and the QI Steering Team. Potential data sources were explored and prioritized. Processes for querying existing data sources such as death records were refined, new sources such as electronic health records and paper/PDF health records were established, and data collection was piloted. The Minnesota Electronic Disease Surveillance System was modified, and an electronic data form was created to promote consistent data abstraction from sources. Throughout the project, progress was evaluated and shared. At project conclusion, MDH project team and the QI Steering Team reviewed project outcomes and approaches to evolve the project into ongoing surveillance. Evaluation: Five common public health LTFU measures were determined. Overall, 77% of attempted measures were successfully collected. Primary and secondary data sources were adopted. In addition, collected data resulted in 7% of cases that were closed to further public health LTFU, often related to a move out of state. Discussion: This project established the feasibility of state public health LTFU surveillance of outcomes and health care use by collecting a common data set applicable across NBS conditions.